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#160802 01-24-2013 05:22 PM
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dramz Offline OP
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Hello Everyone,

Not happy that I made the club but it's great to find such a dedicated group of responders.

I recently discovered that I have stage IV Tonsil cancer that spread to at least two left lymph nodes. The lymph nodes were removed for biopsy on Jan 9 after the needle biopsy came back inconclusive. Those nodes were positive for cancer with HPV 16 and a PET scan was completed but didn't show the primary site. My surgeon decided to do a tonsillectomy and random biopsy's in hopes he could find the primary site, which he did on the backside of the left tonsil. Both tonsils were removed on 17 Jan as well and all affected tissue around the tumor. Biopsy is still out to confirm the area around the tumor is free of remaining cancer cells.

Today I met with my ENT surgeon, Radiation oncologist, and medical oncologist to discuss treatment options. It seems that there are two/three options available. Neck dissection with rad (33-35 sessions). No dissection with rad (35 sessions) and 3 doses of Cisplatin, or a trial option that will include 35 rad sessions as well as treatment with cetuximab. I can find a lot of material for the first two options but I'm curious if anyone has personal experience with or has good reference pages for the use/outcomes with cetuximab. I'm not sure if the study uses the drug in conjunction with cisplatin or alone, but I'm curious about this route. I'm not excited about any of these options but want to make the right decision for my case. The primary site is removed as well as both nodes, so I'm not sure if a super aggressive chemo treatment is something I should consider if I can take a more mild route with the same results. Hope someone can shed some light on this third option or perhaps has the same experience as I. Thanks for taking the time to respond.

Dave R
T1 N2B M0


35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
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Welcome aboard Dave.

I pretty new here too, just starting induction chemo next Monday. Sounds like you have a good team looking after you and up to date on trials and offering different options. That means they are thinking rather than just looking up standard of care.

I just posted in another thread what my surgeon said about trails but basically it boiled down to validate new therapies with less side effects than current standard of care protocols.

I did not give serious consideration to those options but if I were to explore them I would NOT subject myself to being a guinea pig in those studies. For example, I studied induction chemo sequential CRT. There is plenty of studies showing TPF is better than PF over standard CRT only. So why on earth would anyone want to subject themselves to the CRT only control arm? And since phase III trials need to be randomized I believe why gamble? Just my limited view of participating in trials in MY specific case.

Good luck, lots of good folks here and lots of good info.

Don



Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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Dave, welcome to OCF!

The choice will be up to you which route you take with your treatment. The best thing you can do is to get treated at a major cancer center and also get a second opinion. The countrys biggest and most successful cancer centers will use a team based approach to discuss your case individually and come up with a treatment plan for you. They will have the most experienced doctors and is the best place to beat this.

Knowing you are HPV+ that means your cancer responds better to treatment and has less of a chance for recurrence. HPV+ usually means the tumor is located in the base of tongue or tonsils. Its very rare to have it anywhere else.

At this time, you are probably very busy preparing for the next step. You should be eating like crazy. Get a full blood count including thyroid. See a dentist and get flouride trays made plus have any questionable teeth removed now. Line up friends and family as helpers. Anyone who offers assistance take down their name and number and let them know when the time comes you will call them.

Best wishes with everything!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Dave R

Sorry you had to join our club also. My personal advice is to avoid Erbitux (Cetuximab). I chose that instead of platinum based chemo and I am convinced that is the reason for my recurrence at the same site a year later. The gold standard, proven by clinical trials, is IMRT and platinum chemo; cisplatin (not as conclusive with carboplatin but good). Talk with your doctors,
Others will have opinions here also.
There is a clinical trial going on right now trying to find out if Erbitux (Cetuximab) is as effective as Cisplatin, but no results published.
As for the neck dissection, I'm confused. Did the Petscan show abnormal SUV in your lymph nodes. Whatever failures or false positives PETscan have, they have a great track record of showing whether or not the lymph nodes have cancer. The lymph nodes are important to your health. While everyone is excited to read that they had X amount of nodes taken out and none of them had cancer, what it means is they just had unnecessary surgery and removal of a major immune system defense.
Again, ask these questions to your doctors.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I has Erbitux and had a good result from it. I do remind posters that chemo only assists radiation. It is the radiation that kills the cancer and carries the load. Chemo can give you better odds of getting the cancer but it is only a 5-10% additional help so I say concentrate on the radiation and or surgery.

Given the fact that you had two nodes show positive for cancer I would also get the Neck Disection. If you had no signs of cancer in the nodes I would think it would be something you would give some thought to but having found cancer in the nodes I would not risk it.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Just a have been some serious discussions on Erbitux. What I've read says that non HPV cancer responds better to it, and it only works for certain people. It's best to have it in conjunction with cisplatin. Being that your cancer is HPV positive, which responds well to rads and chemo, the neck dissection isn't always necessary. If you had oral tongue or mucosal cancer my response would be different - re the dissection, but i'll let others with a similar diagnoses put their two cents in too. Best of luck and welcome.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hello Dave.

In 2005 I participated in a Phase II trial of surgery followed by chemo (docetaxel arm) plus cetuximab and radiation for advanced SCC of the Head and Neck RTOG 0234. Cisplatin was used with cetuximab for the other arm of the study. I do not know the results of this trial, but you may be able to research it through IRB#04RT105. Your MO/RO should have the trial consent form available for you to review. I had NED until June 2008 when I was diagnosed with mets to my lung. Wish I could offer more information. All the best to you.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
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Another Dave!!

Just my opinion but if it were me I would choose the concurrent chemo rad with 6 weekly treatments of Cisplatin or even Carboplatin.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I did a search on the main OCF news pages to pull up the recent articles about HPV and Erbitux (Cetuximab). This will give you lots of reading to help educate yourself about this option. Sometimes it works great with HPV+ patients and sometimes it fails.


OCF News Erbitux


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2011
Posts: 805
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Just my input and you can see by my signature what we did...if you look at the posters on here who had the Erbitux only, you will see recurrences.Maybe not all, but quite a few. That should speak volumes to you.
Your decision however, best of luck with whatever you decide.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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dramz Offline OP
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Thank you guys for the overwhelming responses. I have a lot of reading to do and I value everyones opinion so thanks for the posts. I'll see what the board recommends and make an informed decision. Thanks again.


35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Just wanted to say Zenda - so glad you are doing well! You are an inspiration.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Welcome. There was a study with Cisplatin combined with or without Erbitux RTOG 05-22, which MSKCC mentions that combining the two did not prove posituve, if I understand it right. They also mention in their letter to the Journal of Clinical Oncology, posted below, that they recommend that Erbitux should not replace Cisplatin, outside clinical trials, as mono tretament anytime soon, until the direct comparison in RTOG 1016 phase III study is complete.

ECOG-E1308 is using Induction chemo, and substituting platinum based chemo with Erbitux for CRT. Dana Farber has a phase II study, NCT01221753, with Induction chemo, and low dose carboplatin plus Erbitux or full dose Carboplatin with Erbitux, I guess depending on Induction results.

I hope this helps.

http://jco.ascopubs.org/content/early/2012/11/30/JCO.2012.46.9049



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hi, Dramz
Are you (or have you ever been) a smoker?
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Paul,

Thanks for the links to the studies. I can only chew on a couple before having to take a break with a splitting headache :-)

Good thing cetuximab was not mentioned in any of my treatment options. If I had not read up on this before I might have been inclined to go that way. that said, one study does not make a new standard of care but to me the risk/reward wouldn't justify it as it seems the primary outcome is to reduce side effects without reducing efficacy. In fact, it appears worse outcomes are linked to using cetuximab rather than platinum concomitant with RT.

fyi - it has been mentioned using cisplatin during CRT but changing to carbo at some point, i think.

Last edited by donfoo; 01-25-2013 01:48 PM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Mar 2008
Posts: 3,082
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Paul

Yes, thanks for weighing in on the Erbitux debate. We had hot and heavy discussions here when I first started reporting that the efficacy of Erbitux had been exaggerated in news stories and articles about Bonner as well as when the FDA approved it for metastatic head & neck cancer. The discussions went nova class when I first found those reports on Erbitux not playing well with HPV in terms of recurrence.
Hard as it might be for you to imagine, I was quite emphatic if not outright tactless about Erbitux being worthless and the threads got somewhat caustic. Funny, it was mostly people who never had Erbitux themselves nor their patients (if they were caregivers) who defended Erbitux the most.
I did feel vindicated when my RO at my CCC told me he will no longer prescribe Erbitux until the recurrence rates issue is resolved.

DonFoo
Yes, Erbitux did sound great and according to is manufacturers and sellers, it still is. Very tempting in that it does shrink a tumor quickly but apparently leaves the nastier bits behind to come back unlike take no prisoners platinum.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2013
Posts: 4
dramz Offline OP
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Paul,
Thank you for the links. I'll continue reading but I think I'm shying away from the Erbitux option. Not sure yet what the treatment entails or in what combo it might be used, but I'll make sure to do my research. Thanks again.

Maria,
I smoked as much as teenage boys smoke in high school but it was minimal. At least I was cool... smile



35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
Joined: Mar 2008
Posts: 3,082
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Dramze

Back to your situation:
Here is a tip that everybody agrees with (at least so far):
next blood test, ask your doctor to order a TSH or Thyroid hormone test. Understand that you are asking the doctor to do nothing more than check two more boxes on blood test form:
866X (T4 Free) and 899X (TSH). It's extremely important to get the actual TSH number that you have now before Radiation.
Again, my tip is from my personal experience, not a clinical trial but IMO just as valid
While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5 or a 4.5 as okay even though endocrinologists who went to Medical school the 21st Century conbsider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill" (levoxyl), I am finally warm again. Plus my energy is back.
Even better if post radiation, your blood test shows you have the same or very close TSH level. But without a pre radiation test, then it's just wild guesses on even the best doctors' part.
Charm



65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2013
Posts: 4
dramz Offline OP
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Thank you Charm. I'll make a point to ask for this test prior to radiation beginning to establish the baseline.


35 year old Male, excellent health minus this pesky cancer
Stage IV SCC of left tonsil and multiple nodes, T1 N2B M0 HPV+
01/07- two nodes removed for biopsy
01/17- tonsillectomy of both tonsils and primary tumor
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